Have you ever struggled with the idea of finding closure in grief? Given grief’s ongoing and evolving nature, the search for final closure can be a misguided pursuit, one that leaves us disheartened and even ashamed. In this episode you’ll hear from a variety of grieving young adults as they break open the idea of closure and identify significant turning points in their process. You’ll learn about moments of clarity, confusion, new understandings, and what it's like when the sharp emotions rise up again. Thank you so much to everyone who contributed to this episode.
When someone dies, it creates upheaval in the support system, leading to unfamiliar territory in terms of how to help those with different perceptions and expressions of grief such as language, repetitive gestures or patterning, emotional disconnect, and searching behaviors. Although the outward expression of someone’s grief may be difficult to recognize, the need for their grief to be acknowledged and supported is universal. In this episode, Jana talks with Rebecca Hobbs-Lawrence, a staff member at The Dougy Center, about ways to support children and adults with developmental disabilities in their grief
Suggestions for supporting children or adults with developmental disabilities in their grief:
Acknowledge the loss by being present and responsive to their verbal and behavioral cues.
Affirm that they are not alone, name the support people they have.
Maintain a consistent routine as much as possible. Give a lot of advanced notice for when their daily routine may change or be unusual.
Facilitate activities or rituals that will acknowledge the grief. This can help children and adults to develop coping strategies and find ways to remember the person who died.
Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum by Karla Helbert, 2012
Everyone Grieves: Stories about Individuals with Disabilities and Grief by Marc A. Markell, 2013
Helping People with Developmental Disabilities Mourn: Practical Rituals for Caregivers by Marc A. Markell, 2005
Lessons in Grief & Death: Supporting People with Developmental Disabilities in the Healing Process by Linda Van Dyke, 2003
How do we help children when a family member is dying? The diagnosis of a terminal illness brings uncertainty, fear, and heartbreak into their lives, leaving the adults who love them unsure of what to do or say. In this episode, Jana talks Tony Grace about how to best support children when a family member has an advanced serious illness.
Here are some suggestions for ways to talk with them about the illness and activities to help them process their reactions, fears, and concerns.
Children need space, time, and language to understand the changes that are taking place and that will take place in the future. If you have multiple kids of different ages, it is important to use words and phrases that are age appropriate for each of them. When communicating as a family, a good rule of thumb is to engage in conversation on a level so that the youngest child can understand, Have separate conversations with the older children and invite each child to have an individual conversation through the weeks and months ahead.
In those conversations mentioned above, share what is happening, why it is happening, and what is most likely to happen if that is known. Be specific with names and diagnosis, but give simple explanations. It is ok if you don’t know the answers to their questions or even to your own questions. You can make a list of questions for the next doctor’s visit or visit a local library. Librarians are a tremendous resource and they can help you and your child look for age-appropriate materials, videos, and references. Additionally, many hospitals now include a family resource center or a patient medical resource center. Ask your doctor or nurse if your facility has one.
Don’t be afraid to mention the word death; it is not giving up on hope but a recognition that we are all mortal beings. If we are alive, our death will be inevitable at some point. Being able to talk about death, whether it be about our own, someone else’s death, or the death of an animal, can actually provide a very deep and lasting connection between family members.
In mentioning hope, it is good to be reminded that hope can and will be redefined over and over and over again. Hope may go from wanting to live long enough to you see your children’s children to hoping that your children will grow up to be an emotionally healthy and capable adult having being taught by your role modeling.
It is also helpful to be reminded that our stories don’t end when we die, they continue in the lives of our loved ones...including our children. The illness and perhaps death of this family member will be part of that story, but it won’t be the final chapter.The current story that is being created is being “authored” not just by the illness, but by you, your family, and the people in your life. There is an opportunity for the story to be written in a way that can be beneficial for each person involved. Families will need to determine what that specifically looks like but generally, it looks like each person feeling informed, connected, valued, and able to express themselves.
Many children and teens have vocalized the need to have a tangible connection to their sick family member throughout their lives. Some have asked for a memory box where they can put pictures, clothing, and other personal items. Others have wished for letters, videos, or tidbits of advice they can access as they get older. One family collected stories of the person who was ill so that their children can learn about who their father was from others. Another family had children videotape and interview the person who was ill, so in the future, they can be reminded of their interactions.
Children with a sick family member often exhibit a lot of energy and in need of a lot of attention…and paired with a home that typically needs quiet 24/7 and focuses on the person who is ill, can often leave children feeling isolated and their energy stifled. Help identify positive ways to daily release that energy...running, sports, martial arts, gardening, dancing, etc… Neighbors, friends, and extended family members can be a great resource to help keep children active when a primary caregiver’s attention or energy is needed elsewhere.
No one likes to feel helpless, including children and teens. Many will want to be able to care for the person who is ill, including young children. Exploring ways that can demonstrate they care, can be really helpful it helping ensure that each person feels valued. Contributions can be as simple as the drawing of a picture to hang in the person’s room, to getting water, reading a book, or massage lotion onto the person’s skin.
For friends and family, it may be hard for families with a person who is ill to ask for help, but getting through all the challenges of a serious illness without any support is unlikely. The illness takes away many choices families have, so for those who want to help, offering to help with a menu of possible activities, rather than offering advice, or just doing something, is often advisable. Once something has been talked about, ask how the person would like it done. This also provides another opportunity for the family to have agency over their lives.
Jana talks with Rebecca Hobbs-Lawrence, a staff member at The Dougy Center, about ways to support children who experience the death of a brother or sister. The loss of a child shatters assumptions parents hold regarding their role as protector and their beliefs about the natural order of children outliving their parents. A child’s death can cause tremendous upheaval in families as a parent’s overwhelming grief pulls them away from their surviving children, often leaving siblings alone to deal with their own grief. Children and teen siblings grieve a unique relationship, one of friend and foe, a companion that will travel alongside in life’s adventures. After a sibling death, children and teens may question their own importance, wondering, “Am I not enough?”
Jana talks with Erin Shuster about the death of her brother from suicide. A former young adult group participant and volunteer, Erin talks openly about the unique aspects of grief when someone dies of suicide and how she learned to identify her needs and advocate for herself.
For information about our groups for young adults, visit: http://www.dougy.org/grief-
Jana and Joan Schweizer Hoff talk about navigating Father’s Day while grieving. Joan, a long-time staff member at The Dougy Center, shares both personal and professional experiences in constructing new ways to approach the holiday. Whether you’re grieving the loss of a father, or parenting a child who is, some of these suggestions may be helpful:
Know that for many, the lead up is the worst part.
If you are supporting a grieving child, talk with them ahead of time about what they would like to do or not do.
Let children know that it’s okay to still want to celebrate and it’s okay to not want to celebrate. Don’t force a child to pick another adult to honor, unless that’s something they want to do.
If you are a grieving parent, consider whether and how you want to engage with the holiday - perhaps you recreate a tradition you shared with your child or do something new for yourself.
Come up with a plan - even if that plan is to do nothing. If you do want to do something, consider doing something that connects you with who the person was and what they meant to you.
Consider a social media fast for the day - or - plan what you want to post.
Identify others in your life who feel fatherly - and - it’s okay if you don’t feel this way towards anyone. Don’t pressure yourself to put someone in that role if it feels inconsiderate, impossible, or dishonoring of your father.
Plan something for yourself - hike, brunch with friends, a trip out of town. …. decide what environment you want to be in, knowing that you are likely to run into dads and families.
Get together with others who are grieving.
Focus on a category - say food, movies, activities, color, or music - choose a few from one or all the categories that your dad or child loved. If you don’t know, and many people don’t, go with your best guess or pick the ones you love.
Jana and Donna Schuurman discuss terms to avoid, and what to say instead, when talking about suicide. Here is a link to download our Tip Sheet on how to support children and teens who have had someone die of suicide.
Terms not to use (and why):
1. “Committed Suicide”
Committed suicide,’ with its implications of criminality, is a carryover from the Middle Ages, when civil authorities, finding the victim beyond their reach, punished the survivors by confiscating their property. Victims were forbidden traditional funerals and burials, and suicide was considered both illegal and sinful by the laws and religions of the time.
2. “Completed Suicide” or "Successful Suicide"
These terms make it seem like something to celebrate: He completed this! She was successful!
We don't say someone "cancered" or "car accident-ed"...
4. Using "suicide" as a noun (as in "he was a suicide")
This reduces the person to the mode of their death.
1. Died by Suicide
The Compassionate Friends was the first to officially adopt the terms ‘died by suicide’ or ‘died of suicide. ’
2. Died of Suicide
Here's a general Rule of Thumb: If you can’t substitute the word “Cancer,” you may want to reconsider how you're using the word "suicide." He died of cancer: He died of suicide.
3. State how the person died (jumped off a bridge; took an overdose); of course, this is the personal preference of family members, something not all will choose to do)
4. “Suicide Death”
Advocated by the Canadian Association for Suicide Prevention. (Some find it repetitive in that suicide IS by definition a death. (Whereas, for example “cancer” by definition does not always mean a death.)
Jana talks with Jenna, a participant in The Dougy Center's group for young adults, about the experience of losing her mom when she was a child and then her father, just before the start of her senior year at college.
For information about our groups for young adults, visit: http://www.dougy.org/grief-resources/help-for-young-adults/
Other great resources for young adults who are grieving:
Wild, by Cheryl Strayed
A Heartbreaking Work of Staggering Genius, by Dave Eggers
The Long Goodbye, by Meghan O'Rourke
Tips for grieving through Mother’s Day
After a death, it’s not unusual for children to have an increased sense of fear and anxiety. (It’s not unusual in adults, either.) When bad or sad things happen, it’s natural to be afraid more bad things will happen. The questions and concerns are normal: How will we live without the person who died? Who will take care of me? Will someone else die? Where do people go after they die? Will I die too?
There's PDF tip sheet included with the podcast. The tipsheet can also be found here: http://www.dougy.org/docs/TDC_Fears_Tip_Sheet_10_14.pdf
Losing and finding yourself in grief.
Brendon and Jana delve into the many layers of loss that we grapple with when someone dies and how that loss can change us. When we grieve, we miss the person and who they were in our lives. We miss who we were with them. Often we miss who we were in general before the death. As we think towards the future, we grieve for the events and occasions that we won’t share with the person.
Over time, people in grief may start to see themselves differently. What they value, prioritize, and want in life can change radically.
These changes occur on many levels:
As you sort through what is different, it can be helpful sit with a series of questions:
Seasons change, but what about my grief?
There can be a lot of emphasis on special occasions – anniversaries, birthdays, holidays, etc. when it comes to events that influence grief. Seasons and other markers of time can exert a similar effect, but can be confusing for those who are grieving – and those who support them. With an anniversary or a birthday, there’s a specific day to connect with an uptick in distress, but with a season, it can be harder to pinpoint. In this episode we talk about seasonal influences on grief and things to think about when navigating those changes. We highlight the approach of spring and how it can be particularly challenging time for those who are grieving. We also share ideas for ways to cope with the shift of seasons.
If you are grieving, it can be helpful to think through:
If you are in a support role, be aware of the events in each season that can be challenging for those who are grieving.
"The language we use to describe events not only reflects our own attitudes but influences those attitudes as well as the attitudes of others."
Donna Schuurman, Senior Director of Advocacy and Training at The Dougy Center discusses some of the difficulties of language and stigma surrounding deaths by suicide.
Living with an advanced serious illness
All in all, even under the best circumstances where families have substantial financial resources and savings, great medical and life insurances, medical knowledge, access to great health care and multiple caregivers, an articulated living will or end of life directives, and emotional/spiritual support, it will be an extremely challenging and life altering experience.
Challenges and complexities
This is not an all inclusive list, but meant to highlight only a few of the challenges:
High Anxiety: Research has shown that children with an immediate family member who is dying have extremely high levels of anxiety and for good reason, death is ever present; Anxiety can be manifested in many forms; restlessness, “acting out,” anger, irritability, stomach aches, nausea, in-attention, “on edge,” emotional distancing or clinginess to name a few.
High Stress: Family members may respond to the stress with big energy and little energy or varying between the two extremes. They will also be trying to cope with the stress in various ways, sometimes those ways will conflict with each other.
Exhaustion: There is usually complete emotional, physical, mental, social, and spiritual exhaustion.
Role Conflicts: The demands of the illness almost always creates role conflicts for each family member whether that is between the role as a spouse or the role of a parent, spouse or caregiver, son/daughter pr caregiver, employee or family member; teen/kid or child. This is one of the greatest contributors of stress.
Financial Setbacks: Loss of income and increased medical expenses & secondary care expenses usually confront most families.
Relationship Issues: Life with an illness usually demands drastic changes in where one can spend time and invest energy. Maneuvering through social, professional, and familial relationship can be a challenge, even in a supportive environment.
Ethical Dilemmas: Most families will be confronted to make decisions that they never thought they would have to make or having to decide between options that are not favorable or agreeable. There may be differences of opinion within the immediate family. In addition, many others will offer unsolicited advice when those dilemmas arise.
So what can a family do?
Keep open, honest, and clear communication in all directions. This includes between adults but also between adult caregivers and children. Most often adults refrain from sharing the truth with children because of our own fears rather than because of their lack of ability to handle the truth. As long as we are sincere, open to answering questions, repeatedly at times, and keep it to their age level, the long-term benefits of sharing the truth far outweigh the immediate benefits of concealing information or misrepresenting the truth. Never lie to a child.
Communicate often. Share what you know as you know it, even if that means you need to share that you don’t know anything. You build trust with children when you communicate often about what it is going on and what you do know.
Give children tasks and responsibilities to reduce feelings of helplessness. No one likes to feel helpless, even kids. Soliciting their help and offering choices to help care for the person with the illness can help foster a sense of empowerment.
Provide structure and routine. Children and adults both need routine, especially in the midst of the chaos that so often ensues around medical issues. Provide as much structure as you can.
Leave room to be a kid/teen. The person who is dying is important, but they are one aspect of the child’s and/or teen’s life. Children need opportunities to play, have fun, be loud, and enjoy the company of other children. Teens also need opportunities for independence and socializing with other teens.
Role model being ok with not knowing. There will be a lot of unknowns. Children need to see that it is ok not to know everything but still have confidence that something can be done, whatever that something may be.
Advocate for your child, your partner, and yourself. Unfortunately, the medical system is not entirely person-centered. Furthermore, our society doesn’t handle death, dying, and grief issues well. Therefore, you may have to step outside your comfort zone and speak up for what you and your family may need.
Acknowledge and validate emotions including guilt, fear, and anger. There will be many thoughts and emotions that each family member will experience at differing levels and at various times. All of them are normal and ok!
Forgive. Families are not perfect. When we are in relationships with others, we are bound to disappoint and be disappointed. Acknowledging your human limitations and giving yourself permission to not just disappoint others but also yourself at times, can address some of the guilt one might experience.
Anticipate future needs/wants. If it is possible, this would include preserving conversations between the person who is dying and the surviving family member and keeping memorabilia. If it is a parent who is dying this could include writing letters of memories or videotaping advice for future milestones and events.
Finally, find allies and peers. This might mean finding new people or touching base with people you might otherwise may not know, but surrounding yourself and the children in your care with people who understand and empathize with your situation, can be the best medicine we can think of! If there was something else, we do be pursuing that.
What can someone else do who wants to support a family that has someone dying?
Be open. Take a posture of listening without trying to fix, judge, rescue, minimize, advise, or silver line. If one can do this, and do it well, it will go along way in changing a family’s experience.
Take your cue from the family; Each family is unique and each family member is unique and what works in one situation may not work in another. So what may have helped you may not help someone else, so be open to doing or being whatever the family might need at the time.
Only offer your advice/opinion if it is asked for. As much as we might want to share with the family our thoughts and opinions, that is not what most families need or want. We may be disappointed if they don’t ask us, but we should leave the opportunity to ask, rather than for us to share.
Offer to help with specific tasks. Offering to transport family members, mow the lawn, care give, or go out for a cup of coffee are great tangible ways to say I care.
Don’t have any strings attached when you do offer support or communicate your care. Be flexible and patient. If you are not taken up on your offer or responded to, wait a few weeks and reach out again. A simple “ I am thinking of you” communicates a lot without any added burden or pressure for the family to respond.
Provide opportunities for respite and normalcy. Restaurant gift cards, coffee breaks, watching a movie/ sports, etc… whatever the family interests were before the illness will be a challenge to do in the midst of the illness. Providing opportunities to reconnect back to those things, however creative it might have to be, are generally appreciated.
For more information about our Pathways Program or how to support a family with an advanced serious illness, please contact us firstname.lastname@example.org
Understanding And Supporting The Grieving Teen
If you know a teen who is grieving a death, you may wonder what responses or behaviors you can expect to see and how to help.
Grief is a holistic experience
Grief can affect teens in many different ways: emotionally, behaviorally, cognitively, physically, and spiritually. The following are examples of how grief might look in these realms. Keep in mind that this list is just a sample of the indicators:
Emotional: Every emotion imaginable can be associated with grief. The most common ones include sadness, anger, confusion, fear, agitation, depression, relief, apathy, joy, restless, guilt, regret, irritability, yearning, increased appreciation, and gratitude.
Behavioral: Dropping activities/hobbies, difficulty sleeping, clingy behavior, regressions, aggression, withdrawal, nightmares, diminished/increased performance at work or school, decrease/increase in social engagement, substance use, over-planning/scheduling of activities.
Cognitive: Difficulty concentrating/confused thinking, forgetfulness, difficulty completing tasks, memory loss, narrowed scope of thinking, intrusive/repetitive thoughts, easily overwhelmed.
Physical: Loss of appetite, weight loss/gain, increased frequency of colds/flu, stomachaches, headaches, and nausea.
Spiritual: Questioning or loss of faith, anger at God or other higher power, strengthening of faith, questioning values, rethinking the meaning of life and/purpose.
So what does this look like in day to day life?
Needs of Grieving Teens and Ways to Support Them
Where did everyone go? How grief affects connections with family and friends.
This episode grew out of a few questions from the community –
Grief affects our connections with others in many ways. Loss can foster a greater closeness with family and friends and it can also wreak havoc on existing relationships, leaving people unsure and disappointed. Many factors contribute to changes in relationships, particularly the role that the person who died played in your family and friend constellation. For some grieving people, especially children and teens, it can feel more comfortable talking with those they aren’t close to, including those who didn’t know the person who died.
Suggestions for ways to make it easier to talk about the person who died in your family:
Valentine's Day is one of the many holidays that shift and change while grieving. As with so many other holidays, the lead-up can be really hard. Advertisements and casual conversations about plans can leave grieving people left out, or eager to flee.
In this episode of Grief Out Loud, Jana and Brendon talk about strategies for approaching Valentine's Day in a way that opens up space to express love and appreciation.
Some ideas mentioned in this episode:
Whatever you decide, go easy on yourself. There can be so much pressure, both internal and external to think or feel a certain way. Know that it's okay to feel whatever you feel (sadness, anger, numbness, irritation, etc), leading up to and on the actual day.
Alternatives to “I’m sorry for your loss.”
This episode delves into that moment when you find out about a death. Most of us don’t know what to say or do, so we go turn to what we’ve heard others say in a similar situation, “I’m sorry for your loss.” While there’s nothing wrong with those words, especially when said with authenticity and full presence, it’s helpful to know how that phrase affects those who are grieving and what you can say instead. Whether it’s getting a phone call with the news, writing out a sympathy card, or learning about a loss during a casual conversation, everyone encounters the dilemma of what to say and how to communicate we care.
“I was so sad when I heard the news about your mom’s death.”
With children and teens, they appreciate an honest: “That totally sucks.”
If you do go with “I’m sorry” expanding it to “I’m so sorry you have to go through this,” or “I’m so sorry this is happening.” can break up the monotony of “I’m sorry for your loss.”
If you’re talking with someone, try reflecting back what they’ve said, allowing them to say more:
“Your dad just died last night.”
“Today’s the anniversary of your sister’s death.”
When writing a sympathy card or email:
Consider sharing a specific memory of the person who died: “I remember so clearly your mom’s smile, it made me feel so welcome.”
“How do I tell my child about the death?” This is the most common question we receive at The Dougy Center. Someone has died, leaving parents and other adult caregivers to struggle with finding the right words to say to their children. In this episode, we outline tips for talking with children about a death. Adults can start by attending to their own reactions to the death. Often the thoughts and feelings they experience can impede or enhance having an open, honest, supportive conversation with their children. As an adult, what do you need to sort out with feeling shame, blame, confusion, guilt, or other emotions related to how the person died? How can you keep that as your story and not put it onto your children?
Summary of tips for talking with children:
Tip sheets: http://www.dougy.org/grief-resources/tip-sheets/
Main site: http://dougy.org
In this episode, Jana and Brendon, answer two questions from the community. The first is from a mother of two young children who wonders what she can do with the ashes of her partner. The second from a young adult struggling with whether they should go to the funeral of a close friend’s mother. In this frank conversation, we discuss common and not so common options for what to do with ashes and outline some foundational questions to consider, both for adults and children when deciding.
Two resources with ideas for what to do with the ashes of someone who dies:
In this episode of Grief Out Loud, Jana and Brendon discuss some of the current mythology surrounding grief timelines. We demystify the idea that there is a recipe for grieving or one right way to go about integrating a loss. Listen to learn new ways of conceptualizing the unfolding of grief. During the discussion, Jana mentioned a couple of relevant resources:
In this inaugural episode of the Grief Out Loud Podcast, Jana and Brendon introduce themselves, talk about the history of The Dougy Center, and our work with grieving children and their families. Jana and Brendon also do a little housekeeping with respect to episode timing (weekly) and duration (aiming for 15-20 minutes), as well as what TDC can offer to the podcast community.
Resources mentioned in the show: